Comments on: Desperation Porn: The Impact of Graphic Medical Images on the Disability Community

By: Annessa

Annessa — Wed, 03 Sep 2014 02:33:00 +0000

As a newly retired English teacher, as well as a person who has OI (Type IV; my mother had it, too), I fully agree with everything you wrote, Kara. Although I am not a parent myself, I have witnessed over the years, both in my job with the public school system as well as just as an observer with OI, that while some parents truly want what is best for their kids and seek to minimize their pain and discomfort, sadly, there are others who really do seem to enjoy the sympathy that comes with having an ill or disabled child. I once encountered a parent who forced her cancer-stricken daughter to go places without her custom made wig because she liked the fact that her daughter’s baldness made her the mom whose kid had cancer! Like Teryl, I see some of these actions as being similar to Munchausen’s by Proxy. Yet, there is another issue with these pics that no one has mentioned so far – and that’s the fact that these images, once they are posted anywhere, exist online forever, and the child in question is permanently robbed of their dignity by being photographed in this way. Even if the parent deletes these photos at a later date, the images can still be out there, lurking in cyberspace, for decades. Whack-jobs who “get off” on these images (and, yes, those people do exist) only need to right-click on an image to save it permanently in their hard drive without the parent ever knowing it happened. These pics can also end up on websites and TV shows aimed at mocking these pics, as Kara mentioned, but more importantly, the child depicted in the photo will one day grow up and may likely come across their own, horrific fracture photo in their own innocent web search. I wonder if these parents have given any thought to how their own child will feel, years later, knowing that they were exploited for sympathy by the very people who are supposed to protect them from harm.

By: Kara Ayers

Kara Ayers — Wed, 22 Jan 2014 14:04:35 +0000

So glad to see the many comments on this post. It’s an issue that hits home with me-and many others. I thought I might address a few comments I’ve missed:
@Elegant Dreams: It’s funny you bring up the title because when this article resurfaced last week (related to one of these images), a few people could not move past the title. Many definitions of “porn” describe it as a form of media intended to fulfill a desire. It’s my stance that these images are just that-an expression of an intense desire for support and attention. There’s nothing wrong with communicating and even outright asking for support-but it’s this method that I have a problem with. In a literary (writing) sense, porn is not restricted to a sexual definition. I chose this term because it relates to the more commonly discussed (in disability lit) inspiration porn.

@Teryl and @Christina I also see the “one up” dynamic. It’s really encouraging to me that so many parents-like both of you-empower their kids with OI and allow them the final say in what images are shared.

@Casey-During the most recent discussion about these images, it felt like to me that many people defending the practice don’t truly get the difference between these phantom pains that we have (due to actually experiencing comparable fractures in our own lives) versus just a general feeling of “yuck!” that maybe any kind/compassionate person would have when they see these images. There is a difference…..That’s not just my opinion but well-documented in nearly everything you read about re-experiencing trauma. I’ve been really disappointed in many people in our OI community who seem to invalidate our own histories of trauma-while at the same time paving their children’s re-experiencing someday by scattering images of their pain.

By: Casey Strother

Casey Strother — Thu, 16 Jan 2014 20:42:03 +0000

Love the article, Kara. Great job as always. I have never posted pictures of any of Lillian’s fractures. If I need advice I private message and it is only x rays. Like others have said, I could never imagine having my daughter screaming in pain and then me running to get the camera or cell phone to snap photos and then putting photos online. I have OI as well and if my parents ever took my photo while in pain and put it online I would have been very upset. I am guilty, though, of posting victory videos. Lillian reaching milestone in PT or at home I tend to post but that is because I am so excited to share her success. When Lillian is older I do plan on asking before posting any pictures of her. There was a photo posted recently, a really bad fracture, that made me cringe and gave me phantom pains (both the photo and the x ray made me cringe) and it did make me wonder why people would want to share that with people.

By: Christina

Christina — Thu, 16 Jan 2014 18:49:41 +0000

Great job, Kara! I feel the same way as you. As a parent with OI who also a daughter with OI and other disabilities it has been emotionally challenging to witness my daughter in pain. It is wonderful that we have social networking sites where we can seek advice from others and talk to people like us who “get it.” However, I think there is a line on what is appropriate and not appropriate to publicly post online. I never realized how much my daughters medical appointments, breaks and pain were going to effect me. I had no idea how much trama I had as a child with a disability until my daughter was born. It took me about a year to literally get through a doctors visit without anxiety. It just freaked me out! As a parent I am super cautious and protective of everything a doctor says and does during my daughters visits.

I also agree with Teryl. Sometimes it does feel like parents, especially without OI, are trying to “one up” another parent based on their child’s horrendous fracture.

By: Teryl

Teryl — Thu, 16 Jan 2014 17:05:25 +0000

By the way… I do not see it as a form of “porn” but do see some parents in the “one up” competition almost saying “my kid fractured worse than your kid and here’s proof”. I see the same with the competition to have the most surgeries, or go to the most prestigious hospitals. It is almost akin to Munchausen’s by proxy in my view. The child’s fractures are the parents pride and identity. Look at me for caring for this pitiful child. When a parent posts “my child broke please pray” not a problem. When they post a photo of the child with their cast or splint, no problem. But there truly is a line

By: Teryl

Teryl — Thu, 16 Jan 2014 17:02:14 +0000

I fully agree on some photos. Some are pretty extreme! I am OK with ones parents post in a private site asking for ideas on hoe to splint. I have never posted a photo of my child in severe pain because the camera is the last thing I am thinking of. Usually I am busy shutting out the world. I agree I posted one last night of a fracture that was stable, did not need casted (you know how OI is), and was not graphic. As a parent I always ask my kid if I CAN post her photo. If she says no, I do not post. I think it is important to involve the child when they are old enough to give an opinion. If they are not old enough, use common sense.

By: Nathasha Alvarez

Nathasha Alvarez — Sun, 10 Nov 2013 15:58:15 +0000

In reply to Don Gardner Jr.. I agree with you, Don. :)

By: Don Gardner Jr.

Don Gardner Jr. — Fri, 09 Aug 2013 14:24:16 +0000

Like Kara, I have Osteogenesis Imperfecta. In fact, I know this wonderful lady personally from our numerous discussions at OI conferences and through social media.

She has demonstrated here a great insight because she can see where this practice can lead. Indeed, it can become a form of pornography to feed the appetites of those who hunger for yet another level of sensationalism.

I don’t want people exploiting images of me in pain across the Internet. Such a practice is really is not much different from the practice of putting people with disabilities on display as a “freak show.”

I applaud Kara for speaking out on this topic and opening our eyes to the problems which can occur from sharing these personal and painful images.

By: Elegant Dreams

Elegant Dreams — Wed, 07 Aug 2013 16:10:36 +0000

My mistake…. I am an advocate on pornography and it is a beast of its own and has absolutely nothing to do with the word porn in your title.